No one prepared me for the unwritten rules of caregiving
These rules serve as a survival mechanism as I care for my mum
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If you are new to caregiving and expect to be handed a manual, just forget it. The real guidelines for being a caregiver will be etched into you by unexpected situations, repetitive routines, admin work, and other circumstances. These unwritten rules are a code you can only learn through living them.
It’s been a little over three years since I found myself in this world of caregiving. I never expected it, just as we never choose what calamities befall us. It was my mum’s myeloma that pushed me into the role.
Even though I sometimes hide my status as a caregiver, I now know all about the rules that govern this world. I am happy to share them with you.
Learning the rules
Vigilance is the first rule. Even when I’m in the kitchen or living room, my ears are always calibrated to the exact frequency of her breathing in her bedroom. When she coughs, I don’t see it as just a cough; it is a data point. And when I don’t hear anything from her, it doesn’t mean that she’s at peace; it is a question for my inquisitive and suspicious mind.
The next rule is the economy of emotion. These days, there is no room for extravagance. We must be efficient when we grieve, and when there’s a reason to be joyful, our expressions of joy must be rationed and held tightly. Why? Because joy is usually fleeting for anyone with a rare cancer. It comes, but it doesn’t last long. A test result might bring good news today, but a month later, you might need to find a distraction from the most recent results. This is why the objective of caregiving is not to provide happiness, but to provide stability. For caregivers, stability is a flat, manageable line on the chart of our days.
The third rule, and perhaps the most brutal of them all, is the suspension of a future. I used to be organized and plan far in advance, but not anymore. With the arrival of myeloma, we no longer plan; we schedule. We now manage the calendar one appointment at a time. The long term is a luxury my mum and I can no longer afford. Our horizon has been pulled in very close; we don’t measure our lives in years, but in weeks.
We did not choose any of these rules. Rather, they are a mechanism for survival, a way to impose order on the chaos of a body that is betraying itself. To an outsider, or someone who hasn’t been a caregiver before, it might look as if I am cold. I might be angry sometimes, but I am not cold. The reality is that the focused intensity of my love for my mum is now under tremendous pressure.
I sometimes miss my life before caregiving. I miss the person who never had to know these rules. I miss the man who could be carefree with his time and generous with his future. But that person could never survive here, today, given what myeloma does to my mum and me. He would have no idea how to read the signs or remain afloat.
There is a final unspoken rule: You will surely be changed. You will learn the language of this harsh and sacred land. And you will do it because, within these borders, your loved one is still here. And that is the only rule that really matters.
Note: Rare Cancer News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rare Cancer News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to rare cancer.
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